NICU WEEK 4...

    

WEDNESDAY, APRIL 20th  -->  SUNDAY, APRIL 24th:

I (Derek), haven't contributed to this blog much. Michelle has been posting all of the updates so I will help her out this week. The days tend to blend together so I will give a 5 day update.

Lola just keeps pressing forward. She is down to 2 liters of oxygen now. Hopefully she will be able to get off of the high flow oxygen soon. Today they moved her feeding tube from her mouth to her nose. I'm sure she doesn't enjoy having the tube running through her nose but she likes it a lot more than having it run through her mouth. She loves to suck on her binky and it is much easier to do with the tube out of her mouth. Little Lola now weighs 4 pounds 12.5 ounces! She has passed her birth weight by over a pound!

Little Lola is receiving lots of love from her grandparents. Michelle's dad got to hold Lola on Friday. Her grandmas visit her quite often. Also, Derek's dad helped Derek give her a blessing on Saturday. She is lucky to have such wonderful grandparents. She is going to be a spoiled little granddaughter.

MONDAY, APRIL 25th --> TUESDAY, APRIL 26th:
Lola broke the 5 pound mark!! She weighs 5 pounds 1-1/2 ounces. She is 27 days old and her adjusted gestational age is 33 weeks 4 days.

She is still on the high flow oxygen but she keeps getting better. She is not having as many swings in her oxygen. Every once in a while when she is eating she will have a dip in her oxygen. Usually she will get it back up on her own but sometimes we have to sit her up and rub her back or her sternum to help remind her that she needs to breath.

Tomorrow Michelle is going to start trying non-nutrition feedings with Lola. Its pretty much like breastfeeding practice for Lola. Michelle will pump and then let Lola try breastfeeding while she is getting milk from the feeding tube. We are excited to see how she does. After a couple days of the non-nutrition feedings they will try normal breastfeeding. Fingers crossed that she does well with it.

I want to give a specific rockstar shoutout to Michelle. She is amazing. Its not easy having a NICU baby, especially with a crazy 19 month old nicknamed Dex the Destroyer. She has done so well with everything and I am so grateful for her. Day after day she just does what needs to be done. Some days are harder than others but she keeps pushing forward. She does everything she possibly can to make sure that her kids are safe and happy. She is such a good mother to Dexter and Lola.

Also, in her limited free time she has made blankets and burp cloths for Lola.

And she has built up quite the supply of breastmilk for Lola.

Thank you Michelle, Love you

NICU WEEK 3...

WEDNESDAY, APRIL 13th:
Lola has been pretty stable from the day before.  The only difference is that she is now in a normal crib.  The requirement for them to get into a new crib are if they are over 4 lbs.  Lola is now 4 lbs and 1 oz.  Her new crib inclines more, so she will hopefully have less reflux and have less "episodes."  Episodes are when she forgets to breathe.  It is a prematurity thing.  She usually forgets to breathe if she gets too relaxed or if she is having some reflux.

THURSDAY, APRIL 14th:
Lola has been doing so much better in her crib.  Since Michelle's SIL is due with a baby anytime, we thought today would be a great day to have Marie (Grandma) hold Lola since this next week could get busy.  Dereks mom will hold Lola tomorrow.  Lola now weighs 4 lbs and 1 & 1/2 oz.  The doctor started Lola on a probiotic which should help her not be so sensitive to her food and digest it easier.  Lola's stats still swing when she gets held.  She becomes so comfortable that she will forget to breathe for a little bit.  We just rub her upper back or her sternum to remind her to breathe.

There is also a correction with the holeS in her heart.  She actually has 2 holes in heart.  We thought she just had the one.  She has a PDA hole and a VSD hole.  Both holes are very tiny.  The PDA hole is in the main artery from the heart to the lungs.  This hole should close on its own around 34 weeks adjusted.  However, if it doesn't she will get doses of tylenol to help it close.  If the tylenol doesn't work, then she will get a small surgical procedure where they will place a staple and a tube in the artery.  The other hole is a VSD, which is very small as well.  This hole is between the ventricle muscles of the heart.  That hole usually closes within one to two years.

The doctors are pretty positive her holes will close since they are so small.  If her oxygen starts to decrease rapidly though, it could be related to the holes in her heart.  While the doctors aren't worried about these holes, we just want our daughter to be healthy.  We would rather not have to follow up with cardiologists frequently to keep monitoring the holes.  It is one more thing added onto the NICU experience, but this is something in God's hands.

(On the side, the picture below of her "triple chin" is much like Lola's Great Grandpa Ron Astle's chin.)

FRIDAY, APRIL15th:

Today, Dereks mom (Debbie) was able to hold Lola Lucille!  When Michelle's mom (Marie) held her, she kept making all sorts of faces.  She would smile and then grunt.  Michelle kept holding the phone out to try to snap a picture of her smiling, but was always late.  Derek was able to get the perfect picture of her smiling in Debbie's arms though.  He must have faster reflexes than Michelle.  I guess piano playing did not pay off in the "who can take a picture faster department".  

Lola has still been doing well.  She keeps swinging with her oxygen.  She will get so relaxed she forgets to breath.  Michelle did skin on skin with Lola tonight which was wonderful.  Lola kept nuzzling her face into Michelle's chest and trying to suck.  This was a first.  She had done this to Derek before, but never to Michelle until now.  

SATURDAY, APRIL 16th:

We got a call from Dr. Gerday.  (Dr. Gerday is from France and has the most beautiful accent!)  Lola receives caffeine on a daily basis.  The caffeine helps remind her to breathe, acting as a stimulant to her brain.  the nurses and doctors decreased her caffeine, but today Dr. Gerday is going to increase it to see if that will help her oxygen when she gets into a deep sleep.  

With these preemies, it is all trial and error.  Doctors don't want to continue to give the babies medication if they don't need it.  So there is a lot of decreasing and increasing to keep them stable.  And then in a few days they will try to decrease medication again to see if the babies can keep their stats stable on a lower dose.  Sometimes the lower doses will work and sometimes the babies aren't ready for those lower doses yet.  So, that quote of taking a few steps and then one step forward, pertains to these babies very well in the NICU.

SUNDAY, APRIL 17th:

Lola was switched back to the high flow oxygen.  She kept "swinging" the last few nights.  Her oxygen would dip and the nurses had to stimulate her so she would breathe again.  We aren't sure if her swinging is due to apnea, reflux, or both.

MONDAY, APRIL 18th:

Lola had been on 5 liters of the high flow, but now she is down to 4.  Just like the medications, they don't like to keep babies on a high amount of oxygen if they don't need it.  She now weighs 4 pounds and 3 ounces!  Go Lola!

TUESDAY, APRIL 19th:

Today has been great.  Lola is really starting to take her pacifier.  The nurses are saying she is getting feisty as well!  She is starting to wake up when it time to eat.  When Michelle holds her, she is starting to nuzzle into her breast (good sign for breastfeeding), and her breathing is continuing to do well.  She is now on 3 Liters of oxygen.

DEXTER, WEEK 2...

The week I got home from my C-section, my MIL took Dex.  I missed him so much but was grateful I could start the recovery process without having to chase Dexter around.  The second week of my recovery, my mom helped out with Dexter.  She would come pick us up in the morning and then take us to her house.  Dexter LOVED being at my moms house.  He loves seeing Bandit and he loves the big tub of Hot Wheel cars to play with.

At the beginning of this week when Derek and I got Dexter back, I wanted to do something fun with him but not too overbearing for me.  I missed planning and doing activities with my little buddy.  So, I thought what a better way to start the week than by finger painting!  I had been trying to introduce Dex to the glorious mess of finger painting for awhile.  So far, it has been a disaster.  He doesn't really like anything sticky or gooey on his hands.  He freaks out!  However, this time we tried it, he gave in.  He LOVED it!  He made some beautiful art work for his sisters crib side.  He was more interested in putting his fingers in the paint, rather than actually using his fingers to paint on the paper.  He made the best mess and since I was a week out of my C-section, Derek so kindly offered to clean up Dex and his mess.

I was so glad I got the dollar store finger paints in these little containers.  I didn't want to buy the big tubs of finger paint because I speculated that Dex would mix all the colors together.  By the end of the finger painting extravaganza, all the little containers were a gross color of brown or on the verge of black.  

After the finger painting, Derek took Dex in the shower with him.  Sometimes a shower is the easiest way to clean these toddlers, when you get messy from cleaning up their mess.  Well, Dexter did not like it!  Probably because he had so much fun the week before in Grandma Debbie's bathtub.  So, the shower turned into Dex and Derek taking a bath.  It was so funny seeing Derek in there, because our bathtub is on the small size.  Derek froze for 30 minutes from half of his body in the water, while he played with Dex.  It was quality man time well spent and I gave Derek the honorary award of, "Dad of the Year" for this sacrifice.  :) 

NICU WEEK 2...

WEDNESDAY, APRIL 6th:
Lola graduated to Nursery B!  Her new bed is by a window looking towards the Y on the mountain.  We are hoping she can get moved by a window looking out to the hallway.  This way Dexter will be able to see his sister!  Moving to Nursery B is a HUGE accomplishment in the NICU world.  She is taking Michelle's milk well and digests it well too.  You would be surprised how much these preemies pass in a bowel movement.

The nurses get her to suck a pacifier while she is feeding through her GIT (gastrointestinal tube) to associate sucking and feeding.  During holdings, the nurses feed her.  Derek held her for the first time tonight and she started sucking on his chest.  It was really cute!

Lola has been on an IV of protein nutrients to help gain weight, however, since she has been doing so well with Michelle's breast milk, today the nurses weaned her off.  Now, through her PICC line, she will receive her antibiotics, which finish next week.  Lola is also receiving Hydrocortisone treatment which helps her adrenal glands produce Hydrocortisone.  The Hydrocortisone helps her manage stress.  The nurses have already started weaning her off of this too.

Derek was able to hold Lola for the first time tonight.  My heart melted and I'm pretty sure Lola is going to be Derek's little princess.  She has such a sweet personality already.  We don't know if the hole in her heart has closed.  Dr. Minton won't do another ultrasound until she goes home.  We ask that all those reading can pray that it will close.  We also ask that her lungs can continue to develop as well.

Wrapped in her Minnie Mouse blanket from Grandma Debbie.

THURSDAY, APRIL 7th:
There wasn't too much change from yesterday.  She is now back up to her birth weight.  Lola is off the Protein IV and is just receiving antibiotics through her PICC Line.  She weighs 3 pounds 11 ounces today.  She is already back up to her birth weight after a week!  And the nurses put her first bow on her.  It is amazing to see her progress in just a week.

FRIDAY, APRIL 8th:
Little Lola now weighs 3 pounds, 11 and 1/2 ounces.  She was started on fortified milk, which is pretty much protein powder.  She gets 2 added calories a day which help her to gain weight faster.  Today while Michelle was holding her, Lola had some reflux and had a hard time breathing.  Her face went blue.  We called for the nurses immediately.  The nurses taught us that with preemies, their throat is open because GI tube is down their throat.  It is normal for them to have some reflux.  Some have it worse than others.  So far, Lola doesn't seem to have it too bad.  Anyways, the nurses taught us what to do in this kind of situation.  We are supposed to start rubbing her sternum or her back.  It helps remind them to breath and loosens whatever is stuck in their throat.  It was a little scary, but now that we know it is a normal thing and the nurses keep a close eye on these babies, we feel much better.

SATURDAY, APRIL 9th:
Lola is still progressing well.  Her oxygen fluctuates during her feedings.  She is starting to show more "cueing signs" every 3 hours.  This means she will start to stir and her mouth will start to root around her feeding times.

SUNDAY, APRIL 10th:
Lola now weighs 3 lbs and 13 ounces.  It is amazing how fast these preemies gain weight on the fortified milk.  She is starting to show more signs of reflux.  Michelle did skin on skin with her tonight and Lola had an "episode".  (It was more epic and scary than any of the Star Wars episodes).  An episode, as the nurses refer to it, is when she chokes on her feedings and forgets to breath.  Her face turned a bit blue and we learned from the nurses to rub her upper back or her sternum to help remind her to breath.  It was scary, but now we know what to do in this situation and we are so grateful she is monitored 24/7.

MONDAY, APRIL 11th:
Lola is still doing the same as Sunday.  Not much change.  However, no news is good news.  This was the first day that Dexter was back in our home.  I am feeling more like a mom and Dexter is such a good distraction to everything going on.

TUESDAY, APRIL 12th:
The doctor called me with an update that Lola had a couple bad episodes throughout the night.  The doctor was worried that Lola might have an infection, so she ordered a blood test.  Her blood work came back normal.  The nurse didn't think she had infection because these episodes only occur near the end of a feeding.  They have made her feedings last longer, which help a little bit, but there isn't a lot that can be done for reflux.  These preemies are just so little, their guts are underdeveloped, and they need time to learn how to grow.  The protein added calories (fortified milk) helps them grow but it also can cause them to have upset stomachs.

Tonight Derek held her and her breathing rate kept dipping.  She was so comfortable on Derek's chest that she would fall into an apnea.  This again is somewhat common in preemies, but it is also scary!  After we notified the nurse, she came in and helped Lola breathe again.  Once Lola was put back in her incubator, she took her pacifier and sucked on it for about a minute.  This is the most Lola has ever sucked on her pacifier.  Lola also weighs just a little over 4 pounds now.  She now weighs enough to be put in a crib.  The nurses think that a regular crib, which can be elevated higher than an incubator, might help her digestive track when she feeds.

NICU WEEK 1...

WEDNESDAY, MARCH 30th:

Little Lola had breathing tubes placed.  Her lungs, like small balloons need some help stretching out.  The ventilator helps stretch them out.  She also had a gastrointestinal feeding tube placed.  She takes a tsp. of milk/collustrum every 3 hours.  She also has a umbilical IV where she is receiving antibiotics.  The doctor is treating her like she is infected because she had been acting like she was.

THURSDAY, MARCH 31st:

She is becoming more independent at breathing on her own.  The RT keeps turning down the ventilator.  She is still on antibiotics and a feeding tube.  Not much change from the day before.  She is stable, which is good.

FRIDAY, APRIL 1st:

Lola would have been 30 weeks today.  She had a slight fever in the night.  They were able to bring the fever down but, Dr. Minton was concerned she might be getting an infection.  They did a Lumbar Puncture and took CSF to test for Meningitis.  The first results came back negative.  We are still waiting on the culture, but Dr. Minton doesn't think she has it.  She does have a small hole in her heart, but that is normal with premies.  It should close on her own.

SATURDAY, APRIL 2nd:

She was able to get off the ventilator.  They pulled her breathing tube out.  Mom was able to hear her cry and it was beautiful! So far she is stable with the oxygen tube in her nose.  She looked a bit yellow today and so they started her on the lights.  It is very normal for preemies to have jaundice since things are still developing.  She looks like she could be in Star Trek with her cool eye protection on.  She is also receiving a Heart Echo today to send to the NICU's cardiologist for the hole in heart.  The hole in heart is in the muscle which means it will most likely close on it's own.  Once we get the results back from the Echo, we will know more.  Her NICU doctor, Dr. Minton isn't too worried about it though.  Today she weighs 3 pounds and 12 ounces.

SUNDAY, APRIL 3rd:
We got the results back for her Meningitis culture.  They are negative.  We also got the results back for my placenta.  They tested it to see if it was infected.  Those results came back negative as well.  Dr. Minton told us he doesn't regret the decision to take little Lola out at 29 weeks.  When she was born, she was acting like she had an infection. (Now we know she didn't have infection).  I was feeling sick that whole day before she was born.  Dr. Minton says that there was probably something brewing in my uterus.  If we had waited a couple more days, I could have become severely sick and Lola could have been infected which would make her stay in the NICU more severe and her treatment worse.

Her gastrointestinal tube is now through her nose.  I told the NICU nurses that I don't ever want to know when they are going to do a procedure because I'm always so worried about how little Lola will handle it.  The thought of them putting a tube through her nose all the way down to her stomach made me cringe.  That doesn't sound fun.  The nurses said she handled it like a champion though.  Since we know that Lola doesn't have infection, they are waiting to see if they will stop the antibiotics which means they can take her umbilical IV out or if they will finish them out.

Michelle got to hold Lola for the first time tonight.  They are limiting skin to skin contact to one time a day for 30 minutes since she still has her umbilical IVs.  Skin to skin will help Michelle's milk supply and also help Michelle's produce antibodies that Lola needs while in the NICU.  It was amazing to see that Lola knows who her mother is.  Once Lola was put on Michelle's chest, she got so comfortable that her oxygen lowered a little bit.  The RT had to increase the oxygen flow.  This is is a normal during skin to skin.  These babies are most comfortable right next to their parents.

3 Generations!  First Granddaughter in the Monson family!

All Michelle's many hospital bands.  She couldn't wait to get these off her wrist!

MONDAY, APRIL 4th:
Lola's umbilical IV was not staying put so they pulled it out.  They placed a PICC line which will last a lot longer.  She is still on the high flow nasal cannula.  Her bilirubin levels came down.  We think that this is a result from the skin to skin.  We were also able to go to a class taught by the Occupational Therapist in the hospital.  There are so many things that we are learning about preemies and babies.  It feels overwhelming but we are doing our best to take everything in.

Here are some of things we learned in the class:

• The nurses try to keep preemies surrounded by firm blanket which acts as a boundary.  When full term babies come out the womb, they bunch themselves often, holding their arms and legs in towards their chest.  When adults and older children get sick, you find yourself curling up into how you were positioned in the womb.  Preemies still had room to move when they are born so it is important to give them boundaries in their cribs/incubators with bean bags/blankets.  When they give preemies a bath, the nurses put a fleece blanket around them.  This makes it more womb like as they enter the water.  The babies respond very well to the firm pressure and it makes them feel that boundary again.  Putting this boundaries up help position their hips and also help them feel like they are in the amniotic sac, which is important for their development.
• When we start talking to Lola in her incubator/crib, it is important to say a few words and then apply firm pressure somewhere.  Each person who visits her should have their own distinct place they touch so Lola will associate that firm pressure with the voice.  
• When doing skin to skin, softly humming a song and making a "shh" noise can help them feel like they are still in the uterus as well.  Also preemies get into a deep sleep faster doing skin to skin rather than on their own.  So skin to skin, up to 4 hours is vital every day.    

TUESDAY, APRIL 5th:

Dr. Minton ordered the nurses to lower her oxygen to 1 Liter. Hopefully throughout the night she will keep up on that level.  If she does, then the nurses will put the lower flow nasal cannula on her.  We went to the parent support group meeting tonight.  It is so nice to know that we are not alone in this endeavor.  And while some may look at our situation and feel sorry for us, we feel so blessed.  We heard some frightening NICU stories last night.